Hoping on Hope

  

Today I’m feeling like the healthcare system has failed me. Eight years after inflammation appeared on my right shoulder, dozens of prescriptions, different doctors, countless nurse practitioners, various nurses, medical students learning about my rare case, an array of Emergency Rooms, several procedures such as: spinal injections, MRIs, CTs, Botox injections, and nerve blocks, alternative treatments and, at last count, I have 10 specialists on speed dial and I have not found relief. It’s really a dizzying thought when I think of it. I’ve spend so much of my time, emotional energy, and money to have a better quality of life despite my chronic illness. Since I could remember, I have been searching for an answer. First, it was a diagnosis. Then, it was a doctor. After that, the process to find specialists. Soon after, a proper ‘cocktail’ of medication. Establishing a new low-stress and healthful lifestyle came next. Now, I’m on the hunt to improve my quality of life. I forgot to mention all the other tasks of being a chronically ill patient: billing, keeping proper finals, making, rescheduling, and canceling appointments, coordinating transportation and lodging to those appointments, and stacks of paperwork that need to be done. Needless to say, managing my health has become it’s own job in and of itself. I joke that I could hire-out a part-time personal assistant for all this madness. This is why I consider anyone who works in healthcare and can keep their sanity as some kind of saint and superhero combination. There is actually truth to the joke: all of this could be considered a part-time job. Maybe one day I can afford to hire it out. My real hope is that there will be no need.

Today, I’m not feeling very hopeful. I’m just filled with questions. How is epigenetics going to stop my chronic pain in its tracks? Am I ever going to find a doctor that will look at the whole picture, instead of a list of my symptoms? Am I ever going to be treated in the way I need by our obviously broken healthcare system? Why am I continuously under treated for my pain? 

Those are just a few of the questions swirling around in my brain. I find it difficult to focus on anything else. I’m constantly researching, reading, and watching Ted Talks to keep up on the latest in healthcare. My biggest fear is that I will be searching my whole life: wasting my precious time, energy, and money. My biggest question of all: where do I go from here? What is the next step?

I hope this year brings more answers than questions. For now, I will cling to my last bit of hope.

Holiday Reflections

I used to love holidays. The anticipation, the all-day celebrations, the food, the desserts, the music, the movies, the traveling, and visiting family. I loved wrapping presents, shopping, and making gifts too. I loved seeing the storefront displays and decorations. Now, I’m starting to see the holidays for what they are.

I’m not a cynic; I’m actually far from it. There is just something about the holidays that resembles a stale gingerbread house. It might be the carefully manufactured season, the fact that everyone eats whatever the hell they want, the thoughtless giving, the debt, or the forced happiness. What about all of the ‘shoulds’: you should really get so-and-so a gift, you should get more stocking stuffers for everyone, you should make sure every present is wrapped to perfection, and every bow should match the wrapping paper. When does the madness end? What is this doing to our psyche? I wish the holidays weren’t about presents, who has the best decorations, or consumerism. I wish they were about helping those in need and about appreciating all that we have. Most of all, I wish they were about spending quality time with family where we are honest and listen to one another. 

I have many thoughts about the piles of presents that I will admit I receive. I mostly think about how I would feel if the pile shrank to one. I would love to only receive one present. Nothing would delight me more than to see my mom stress less about the holiday shopping. That in and of itself would be a gift. After the unwrapping is done, I always dread having to make room for all of my new things anyway. Instead, I would like to see my family only spend what they can afford. In lieu of gifts, I would like to donate the gifts to families in our community who wouldn’t otherwise have a Christmas or donate to my favorite charity (hint, hint…DMRF).

There are new things that I have come to love about the holidays. I love the feeling of renewed hope that surrounds Christmas. No matter how bleak my symptoms or how bad my chronic pain is, the glow of the christmas tree offers a flicker of hope. I love reconnecting with friends and family. I also enjoy wiping the preverbal slate clean every January 1st.

This year, I did something different: after setting my usual budget, I stopped listening to all the ‘shoulds’ or partaking in the fake happiness. I started to be honest with myself. Guess what? I found that I wasn’t in much of the Christmas spirit this year and that it was perfectly okay to feel this way. I dare to admit I never watched a holiday movie in its entirety. I didn’t frost a single sugar cookie or listen to one christmas carol. No, the world did not come to an end. I’m happy to report that not a single person was disappointed because I “should” have given them more stoking stuffers or otherwise. 

However, there are some things about the holidays that I wish that were easier. I wish that I could have a symptom-free day with family. Instead, I tend to spend as much time as I can at a function instead of pacing myself. Last year, I burst into tears on the sofa on Christmas Eve simply because the pain was too much to bear. This year it was much better. I started out all dressed up, then slipped out to change into something more comfortable. I think each year will be a learning process. I also think not stressing about the holidays being ‘perfect’ is key for anyone with chronic illness. For me, this will mean one day out shopping, mostly online shopping, minimal decorations, minimal wrapping, and having to pick and choose which holiday parties I go to.